One of the most difficult questions someone with a chronic illness will face is the question of parenthood. Millions of questions, doubts, and insecurities flood our mind when we start thinking of the possibility:

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Will I ruin my future and further compromise my health?

What if I can't physically care for my child?

Will my children grow to resent me?

Will I be a bad parent because I'm not able to do things other parents do?

What if my child is born with unforeseen chronic conditions that change our life?

What if my partner regrets their decision to be with me?

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The societal and familial pressure to have children weighs on many women regardless of age, stage of life, and circumstance. For chronically ill people the pressure remains, but also includes the serious unknowns that illness brings. Family and friends who don't know the ins and outs of your disease may not understand why you are making certain decisions like waiting, planning, choosing to be childfree, choosing to bottle-feed, choosing to take medication during pregnancy, prioritizing your physical needs, etc. Queue the feelings of loneliness.

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I recently posted a video to my TikTok venting about this topic and how I feel pulled in every direction when it comes to family planning. I feel pressure from family to provide grandchildren. I feel overwhelmed by the thought of raising a child in the midst of a severe flare. Despite my desire for a child, there are many days I am positive it would be a grave mistake. So I asked viewers, specifically parents with RA, to weigh in on the subject.

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I received dozens of messages from parents who were ill and chose to have children, parents who had children and then became ill, and children who are now grown but were raised with chronically ill parents. There were a few themes that seemed to be present in almost everyone's story and I want to share those with you now. My sincere hope is that these vulnerable and honest answers help you in your journey to deciding whether or not parenthood is for you.

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Your Partner & Support System Matters

This comment was made often, both by people who said they wouldn't have survived without such incredible support and by people who had no help at all and for that reason felt like they were living a nightmare.

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Parents expressed that having a partner/supportive individual who is 100% all in will make a world of difference — not just in caring for your child, but in caring for you as well. Your support system should be ready to sit in the trenches with you, cook for you, clean for you, fight for you, and hold you when you feel like giving up.

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Having strong support could mean the difference between "oh no, what have I done?" and "this is the hardest thing we've ever done, but I'm glad we're doing it."

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You Should Create a Treatment Plan for Pregnancy and Postpartum

A lot of parents expressed that they were clueless about medications during pregnancy and postpartum, and many went without medicine because they didn't know any were available. Some rheumatologists are not well educated on medications and pregnancy and instead rely on the old "you should go into remission because of hormones" statistic (by the way, only *two-thirds of women report decreased disease activity during pregnancy, which leaves a third who don't experience any relief.), encouraging their patients to go cold turkey.

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Heather, a Sjogren's patient and advocate, said "It's okay to ask a lot of questions of your specialist, doctors, and healthcare team so you understand the full picture of what pregnancy and postpartum can look like for you as an RA patient...

If you're on current medications right now, you're gonna want to figure out whether those medications are safe for pregnancy and if they're not what are the alternatives for you...?"

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To the surprise of many, there are actually quite a few medications you can use during pregnancy, postpartum, and breastfeeding. A great resource to learn more about this subject is ReproRheum.duke.edu, a project out of Duke University that helps rheumatic patients considering pregnancy understand medications, risks, and how they can better plan for a family.

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You Have to Get Creative and Learn to Do Things Differently

Just like everything else in a chronically ill person's life, you may need to do parenthood your way.

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Sue S. commented on TikTok, "I became ill after having children. I did a lot of parenting from bed. We read a lot of books and played a lot from my bed."

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I thought this was a brilliant adjustment! So much of parenthood is usually spent on the ground in uncomfortable positions playing with your children. There's no reason you can't bring the party onto the bed or couch where you can rest comfortably and continue spending time with your child. Another viewer said that she and her son have made a little ritual out of watching movies together and playing cards on the bed. I think this is also where having a good support system can play a major role — maybe you aren't physically able to do certain activities with your child, but perhaps a neighbor or partner is and can include your child in fun activities.

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Some mothers opt to exclusively bottle-feed in order to maintain a sense of bodily autonomy and ensure that the child isn't so reliant on the mother's body that no one else can provide the full extent of care in the event of a serious flare. Parenthood doesn't have to look a particular way. Do what works for you no matter how unconventional it may seem to others.

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It's Necessary to Be Selfish

All parents understand the struggle to prioritize their needs over their children's. Mothers will bleed themselves dry before putting themselves first. However, chronic illness demands that parents be a little "selfish". You will need time to care for your joints, take hot showers or baths when you're in a flare, get extra sleep, and attend appointments. It may mean prioritizing finances so that you can afford medication rather than the new toys your little one wants. Whatever the case, the moments of selfishness (care!) ultimately mean that you will be a better, more present parent.

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Chronically Ill Parents Understand the Decision to Not Have Children

One of the strongest themes from parents was "I totally understand the decision to not have children because this is hard and perhaps I'd do things differently if I had the chance." Parents expressed immense love and gratitude for their children and their life, but acknowledge how harrowing the reality is at times.

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The bottom line in this discussion is that there is no right or wrong answer. There is no way for an individual to predict the future. It is all a massive risk and the only question that matters is whether you, and only you, want to go on this journey.

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To conclude, I'd like to leave you with these honest words from Janie Pressley, a mother and friend living with RA:

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"Being a mom has been the most rewarding yet most difficult time of my life. I will say that if you do make the decision to have kids, it most certainly won't be easy. Nothing good in life ever is, but I have faith that you can absolutely be a [parent]. If you decide that this may not be the route for you, it doesn't make you a failure. I know it'll be a very disappointing road if you go this path, and it's okay to grieve. This does not make you less than, and it sure as hell doesn't define your character."

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Sources:

Hazes JM, Coulie PG, Geenen V, Vermeire S, Carbonnel F, Louis E, Masson P, De Keyser F. Rheumatoid arthritis and pregnancy: evolution of disease activity and pathophysiological considerations for drug use. Rheumatology (Oxford). 2011 Nov;50(11):1955-68. doi: 10.1093/rheumatology/ker302. Epub 2011 Sep 2. PMID: 21890617; PMCID: PMC3198908.

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